No let up on Lyme fight: Editorial

U.S. Sen. Kirsten Gillibrand visited the town of Marlborough Monday, July 10, 2017, to highlight delays in the implementation of new Lyme disease legislation. The bill seeks creation of a working group within the Department Health and Human Services.
John Ferro/Poughkeepsie Journal

Information on the prevention of Lyme disease and other tick-borne diseases is displayed on the Dutchess County Rail Trail in the Town of LaGrange in this 2015 file photo. Researchers at the Cary Institute of Ecosystem Studies have targeted more than 5,000 neighborhoods in Dutchess County for a 5-year study aimed at killing ticks and reducing Lyme rates.(Photo: Darryl Bautista/Journal file)

Often – too often – crucial federal legislation gets approved with great political fanfare, only to see months go by – if not years – with nothing to show for it. That can’t be allowed to happen in the fight against Lyme disease. Far too many people are hurting, are looking for answers, are fed up with the system, and are wondering just how long they have to wait before their plight becomes a bigger priority to solve.

Last year, for instance, Congress overwhelmingly approved and President Barack Obama signed into law an initiative designed to empower patients and their advocates in the fight against Lyme disease and other tick-borne illnesses. Specifically, this legislation requires the Department of Health and Human Services to create a working group to make recommendations after inventorying the work being done on these issues and push for better coordination among federal agencies.

This sound idea is designed to maximize research priorities for Lyme. It’s also imperative that patients and their doctors be included in the decision-making process leading to a long-term strategy.

New York’s congressional representatives were instrumental in getting the legislation approved. But, as U.S. Sen. Kirsten Gillibrand, D-N.Y., recently pointed out during a visit to the area, little, if anything, has been done. She cited the Trump administration’s slow response to the new law, saying “It’s clear the administration is not working with enough urgency.”

As if there weren’t enough pressing reasons to act now, a new study, as reported by the Poughkeepsie Journal, suggests that suicidal thoughts in patients with Lyme and other associated diseases may provide context for the thousands of unexplained suicides in the United States each year. The report, authored by New Jersey-based psychiatrist Dr. Robert Bransfield and published in the peer-reviewed journal Neuropsychiatric Disease and Treatment, is chilling and demands attention.

As a result of Gillibrand’s statement and a subsequent inquiry by the Poughkeepsie Journal, the federal Health and Human Services issued a statement, saying the agency will seek nominations and make selections for the working group by late summer or early fall. The agency also says the first meeting to be held before year’s end. HSS must honor this pledge.

Plenty of people in the Hudson Valley have either experienced or witnessed the effects of this menacing disease, one that affects 300,000 people annually. Lyme can cause chronic pain, fatigue, muscle aches and other health ailments. While it can be treated with antibiotics if detected early, there is a huge debate among doctors, health regulators and insurance companies regarding the treatment of long-term cases. That’s why research and funding are so important to this fight. And that’s why there must an unwavering commitment to put aside years of neglect and specious arguments and put the focus where it should have been all along – on the patients and their health.